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Hi can anyone out there help me understand bowel endo? I did

Hi can anyone out there help me understand bowel endo? I didn’t even know I had endo until a laparoscopy two weeks ago and they only took it off my ovaries and apparently there’s a shot I can take? Or birth control pills? But my bowel needs to be removed? Does anyone else have this? I am at a loss for what is going on. Thank you
Amber

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Raine14's picture
[16045]
Apr 16

@Amber2320 It sounds like your gyno is using old and outdated methods. "Burning" is no longer the technique of choice because it leaves the root of the endometriosis cysts behind, allowing for the cysts to grow back. "Excision" is the recommended practice now, as it removes ALL of the cyst and reduces the chances of a return growth. (Doesn't mean that you won't have endometriosis popping up in other places later, but it does mean that what the doctor removes stays removed.)
In very, VERY rare cases, where endometriosis has perforated the bowel, removal of the bowel will be considered. At this point, we're talking severe pain with bowel movements, lots of blood in the stool, chronic diarrhea and/or constipation, in-and-out of the hospital, etc. Since you haven't mentioned any of those symptoms, it sounds to me like you need a doctor who is willing to excise your endometriosis from the bowel. Now that I think about it, it's actually dangerous to use the burning technique near internal organs, like the bowel, for fear of damage to those organs. That's probably why your doctor didn't even consider removing the endometriosis. And let me stress this, the endometriosis on your bowel CAN be removed. I had endometriosis on my bowel, and it was all successfully excised (aka removed).
Actually, here is an article on endometriosis on the intestines by Dr. Redwine, one of the leading experts in the field. (http://endopaedia.info/subtype2.html)
Speaking of specialists, I don't know where you live, but just in case this is possibility for you, I highly recommend Dr. Roseann Maikis in Nashville, TN. She works with a lot of out-of-state patients, is incredibly compassionate and flexible, can bully insurance into anything, and her staff is brilliant.
And yes, you can certainly try birth control. It won't fix or cure anything, but it can slow down the growth of endometriosis and decrease symptoms. No single birth control works for everyone (I went through 5 or 6 before finding one that fit me), so don't give up if the first couple don't work or have bad side effects. There are TONS of options here.
Lastly, you do NOT have to agree to any treatment you don't want to try. This is YOUR body. Endometriosis doesn't have a cure, so we have to live with it the best way we can. That means we know better than the doctors what we can handle. Sometimes that means shopping around for the best doctor. Other times that means standing up for ourselves. I have literally walked into gynos' offices laden with charts and information and a PLAN for what I wanted in terms of treatment. You are your best advocate. (And if advocating is hard, don't be afraid to grab a family member or friend who doesn't mind coming along to appointments and advocating for you.)
Phew, sorry about the length of this reply. Honestly, I'm a bit mad at your doctors. What are they thinking? Jumping straight to such a major surgery?
Before I forget, can I ask what symptoms you are experiencing? If any? Endometriosis is different for every woman. I deal with a lot of pain and digestive problems. My aunt has no symptoms, except that she can't bear children. And my best friend has no symptoms other than hemorrhaging blood every period (she's actually had to get a couple of blood transfusions).

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[30]
Apr 17

You are so wonderful thank you so SO much! They’ve now told me I have “cul de sac” endo? Like I have no clue here I feel like I’m doing so much research it’s crazy and I wish I’d known things before surgery. This is invaluable information, thank you ❤️

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Raine14's picture
[16045]
12 hours ago

You are very welcome! Lol, I know I can do a bit of an information dump and that can be overwhelming, but most of us "endo warriors" (a popular nomenclature) end up doing mountains of research trying to understand everything. Sometimes we're lucky and we get good doctors (my primary care doctor had endometriosis in her youth, so she's been a great resource for me), but often we get landed with doctors that aren't familiar with endo or aren't caught up in the latest techniques and treatments. We learn to be our own expert. And I remember being so lost when all this started for me. I like being able to share what I've learned with other women.
Speaking of which, the cul-de-sac area is probably the most popular spot for endometriosis to appear. It's the space located between the back of the uterus and the front of the colon/rectum. :)

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